Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

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On Thursday afternoon, she was increasingly agitated. We thought it might be she was in more pain but yesterday morning she appeared very drowsy and slightly disorientated. Aunt Clare was with her and immediately alerted the staff. This triggered memories of her previous significant episodes (i.e. life-threatening) and so there was a fast response from medical stuff.

Tests quickly showed that her haemoglobin had dropped to 65. We would normally expect it to be over 120, Anna’s often sits somewhere near a hundred and if it goes below 80 she would normally have a transfusion. It probably explained why she was so sleepy and so she had a blood transfusion yesterday afternoon.

Her liver function was slightly off at the beginning of the week and tests yesterday showed her blood clotting was not right. Her body is also creating a chemical which shows that there is Inflammation in the body – ferritin. She normally has her obs (blood pressure and temperature) done every four hours but after appearing slightly confused yesterday morning she was on 2 hour obs including neurological checks all day and overnight. Nobody was taking any chances this time.

Blood cultures have confirmed that she has a bacterial infection – staph epidermidis. She’s had this before, it’s a common infection found on most people but with somebody with a port it can cause complications. She is now on two IV antibiotics – one to specifically treat the staph epidermidis and another type which treats a wide range of infections (‘Domestos’ antibiotic). This infection is unlikely to have caused her liver and blood problems but could become a concern if it gets worse.

Her skin is still red, angry, crusting and peeling off, as it has been the most of the week. It seems more likely now that the antifungal drug, voriconazole, has been the cause of the problem. It has made her skin extremely sensitive and the hot sunshine we’ve had over the last 3 to 4 weeks has meant that her skin has reacted in this way. She is in a lot of pain but her temperature is normal (the one good sign!). She has been extremely brave today, having her face cleaned, which was very, very painful.
It’s also important that her bowels are working properly and that she isn’t being sick so she’s on regular laxatives and anti emetics. Her u and e (urea and electrolyte) are being closely monitored and due to low potassium she is on IV fluids with added potassium.

She improved over the day, had a relatively good night and is much more alert this morning (although she is very, very, very grumpy!). Hardly surprising, given the amount of pain she must be in, despite frequent pain relief.

Before Thursday afternoon, when she seemed to deteriorate slightly, it was thought we might get home on Friday. But the way she has been since then means that we will certainly not be going home until she is much improved.

We are very lucky to be here in sick kids where they have such amazing staff. The doctors are looking closely at all of her previous significant episodes, trying to establish any kind of pattern. What seems to be emerging as a possibility is that whenever Anna has any kind of trauma (infection or in this case her skin), her body responds in a similar way. Her liver function drops, red blood count falls dramatically, the inflammation marker in her body rises and, in previous episodes, her blood sugar has plummeted. This time It seems either it’s been caught earlier or the trauma is not so bad. And it means in future we will all be better prepared to deal with these kinds of episodes.

Anna has undoubtedly had one of her more difficult weeks but she has managed to smile three times – once with mark the play volunteer, once with the clown doctors and once with Stevie the clown.